May 2015
Newsletter

In the reasonably comfortable life that most of us live, we very often take many things for granted. Do we ever stop to think what life is like for a child, whose family has been destroyed by an illness, paralysis of a parent or death in the family? By the time the event has occurred, all the family’s financial resources would have been exhausted. These children may drop out of school.

Pallium India’s education support program now looks after about 300 children. But their lives are grey. They do not have opportunity for a lot of fun.

Pallium India’s volunteers have initiated and have been successfully conducting a 3-day summer camp – “Kuttikkoottam Summer Camp” – for these children, for the past few years. This year, too, the program was held from 23rd to 25th of April. Shri P. Vijayan IPS inaugurated the program. The children could not have had a better role model. Shri Vijayan was a child labourer for five years, before he could earn enough to get a degree, and then had to work in a soap factory for another five years before he could realise his ambitions pertaining to education. There were many motivational talks and one whole day was spent in the Magic Planet – a day dedicated to some fun.

Volunteers of Pallium India, we salute you for essential humanity. And dear children, thank you very much for giving us the privilege of offering you some support.

Gilly’s unique contributions

Many of you would know Ms Gilly Burn, the palliative care nurse-pioneer from UK who founded “Cancer Relief India (CRI)”.

More than quarter of a century back, she travelled the length and breadth of India, preaching palliative care, finding pioneers, getting them trained and empowering them for palliative care. (The Chairman of Pallium India was lucky to be one such person.) She has supported Pallium India in numerous ways including teaching of course, but every time she comes, she gets a bird’s eye view of the work and finds some gap to be filled.

When she came in 2014, she decided that our inpatient facility was looking too sad. For Gilly, going personally to buy paint, finding volunteers to paint and transforming the ward to a happy place were all in a day’s work.

This year, she found that the team needed a low cost and efficient transportation for messengers, and here is her gift – a scooter.

Good news! A palliative care service with home visits, outpatient and inpatient facilities has been started in Lisie Hospital in Kochi, Kerala. Lisie Hospital is a charitable private institution, often the refuge of people who cannot afford to go to the expensive corporate hospitals. The palliative care team consists of Dr Rosakutty Mathew, Dr Saramma Easow, Ms Smitha Tintu, Ms Gigi Shiju and Dr Bino George.

We receive this news with great happiness in the background of the sad situation that most Indian hospitals do not offer pain relief and do not stock morphine, which, as per the Government of India’s list, is an essential medicine. It is gratifying that more and more hospitals are now taking up the responsibility to offer palliative care to their patients, though the progress is painfully slow.

Congratulations to the management of the hospital and to the palliative care activists of Lisie Hospital.

It was a pleasure to get to know Prof. Dr. med. H.Christof Muller-Busch and to find the parallels and the contrasts between the stories in Germany and India. Dr Muller-Busch, an anaesthesiologist, says palliative care started in Germany in the 1980s but the progress was very slow till 1993 – exactly as it was in India. Since 1993, the progress in Germany has been in leaps and bounds.

The German Government passed a law in 2007, which gives every citizen a right to specialised palliative care, but coverage today is only about 35%. Well, this did not happen in India, but in Kerala, the palliative care policy did come up in 2008, and the coverage would be rather similar.

Leaving the parallels alone, many things have become much more advanced in Germany. Undergraduate medical students get palliative care education. There are post-graduate certification courses, each of 150 hours. Dr Muller-Busch says, it is the most sort-after post graduate qualification, next only to emergency medicine. There is a new law coming up – hospice and palliative care law. Once this is passed, they expect there will be more money for palliative care. The law will also introduce advanced care planning.

A lot of discussion is going on in Germany regarding physician-assisted suicide. As it stands now, suicide is not a punishable offence in Germany, and hence assisted suicide may not be a big issue legally, in future.

Pallium India had the privilege of having a meeting at the German Ministry of Health with Dr Ingo Ilja Michels, who heads the office of the Federal Drug Commissioner and who co-ordinates Central Asia Drug Action Program of Government of Germany. Dr Michels was deeply interested in the recent developments regarding opioid access in India. The meeting happened on a day when the German Cabinet had just taken a decision to pass a new “Palliative Care and Hospice Law”. This law, once passed by the Parliament, will increase the budgetary allocation for palliative care.

An important point that Dr Michels brought out was the issue of remuneration. In Germany, doctors with training in palliative care who were willing to go out into the community and see patients in their homes, are paid better than their colleagues who work only in hospitals. That sounds like a great example to follow.

We parted with an understanding to continue the correspondence and to discuss plans for the future.

“Imagine treating pain in children with advanced cancer using only paracetamol?” writes Dr Megan Doherty, a paediatric palliative care physician living and working in Dhaka, Bangladesh. “Until August 2013, there was no paediatric palliative care service at this hospital, despite the significant need for these services. Recently, with the support of World Child Cancer we have started to develop paediatric palliative care services within the department of Paediatric Haematology and Oncology at BSMMU.”

Initially, it was not possible to prescribe morphine; however sustained advocacy has begun to yield results and morphine tablets and syrup have become available.

In the picture, you can see Dr Megan Doherty holding morphine syrup, happy to have been able to use it and relieve suffering.

Read the article by Dr Megan Doherty published in ehospice, where she talks about barriers to accessing palliative care for children and the encouraging developments in Bangladesh.

Pallium India seeks clinically experienced international physicians who are able to practice and teach in a variety of settings, include home visits, outpatient visits, and the inpatient unit. They must be adaptable to new environments and be able to commit to over 3 months. Pallium India will provide translators as most patients will prefer to speak Malayalam. Teaching will be done in English.

We are glad to report that one donor paid off Rajesh’s loan to the bank. A monthly foodkit is reaching him, making sure that the family will never be hungry. A local organization who is already doing some philanthropic work is also looking after the family in general, particularly attending to their medical needs. Mini, Rajesh’s wife, has had a medical check-up when she was unwell and the son has had his dental problems attended to.

We congratulate the Indian Medical Association for being advocates on behalf of patients and families. IMA has taken a clear stand, which will reduce treatment cost and benefit all, irrespective of their income. The essential elements of IMA’s suggestion are

Pallium India, in collaboration with the Cachar Cancer and Research Centre and with the support of International Association for the Study of Pain, organised a two-day sensitization training program in Pain and Palliative Medicine for the final year UG medical students of Silchar Government Medical College. This program was the first of its kind to be organised in the state of Assam. 87 UG students, 9 PG students, HODs of various departments, including the Principal and the Vice principal attended the program. The program was well received by the participants.

For most of the students as well as the faculty of the college, the concept of palliative care was new. At the end of the training, several students expressed interest in getting a better understanding of the practice of palliative care.

There is no palliative care service available at Silchar Medical College Hospital. Apart from one doctor, Dr.Iqbal, and two nurses, Ms. Sarita and Ms Achun, at Cachar Cancer and Research Centre, there are no trained palliative care healthcare professionals there. Dr. Iqbal, Ms. Sarita and Ms. Achun had undergone 6 weeks certificate training in palliative medicine / nursing from Trivandrum Institute of Palliative Sciences.

“India is a stark example of how commodifying healthcare can lead to corruption, erode doctors’ integrity and damage relationships with patients”, says Dr Hannah Fox who volunteered for a palliative care organization in Kolkata for six months. “Money ultimately distorts decision making regardless of the culture or country”.

In an article published in the Guardian, Hannah continues, “I looked after a young man with multiple myeloma, paralysis and the worst bedsore I have ever seen eroding through his left buttock to the bone. When I first met him he was smiley with a gentle manner and few complaints. Over a month his physical condition and spirit declined. When he developed a severe infection, his wife was the one to say ‘I think he is dying’. She was right, and a plan was made to withhold antibiotic and continue symptomatic treatment. The next morning I found he had been admitted to intensive care overnight. He had had a central line inserted, was hooked up to monitoring with pumps delivering expensive antibiotics and medication to maintain his blood pressure. He was no longer able to communicate, semi-conscious and distressed. His family was only allowed to visit for a few hours each day. Despite my best efforts the treatment continued until he died a week later”.

We hope the medical system in India will see the writing on the wall. There are many injustices; we need to focus on some in our advocacy. Every year, there are more voices raised against the social evil of torturing patients and families at end of life. This unethical practice has to stop.

Trivandrum Institute of Palliative Sciences (a World Health Organization Collaborating Center), an organ of Pallium India, calls for Expression of Interest from medical institutions in India for undertaking development of palliative care services.

The aim of the project is to initiate palliative care in medical institutions which agree to making palliative care an institutional priority. The project will provide limited financial support, training of professionals and offer technical support to the selected institution.

All Government or charitable medical college hospitals or other major hospitals and major cancer centres are eligible to apply. Those from states without much development of palliative care services will be given priority.

The Institution selected is expected to sign a Memorandum of Understanding with Pallium India. It should identify a doctor and a nurse to undergo a six weeks’ certificate course in Palliative Care at a centre identified by Pallium India. The trained faculty is to start a palliative care service abiding by national standards and following WHO guidelines.

Pallium India will bear the expenses for training of a doctor nurse team and will provide technical support, mentoring and monitoring of activities. A monthly modest financial support will be provided for two years in addition to an amount for the conduct of an education/awareness activity. A screening committee of the funding agency and Pallium India will be responsible for selection of centres and for monitoring and evaluation of the project.

Palliative Care Information Centre

Contact Pallium India’s Information Centre (9 am to 12 noon, except on Sundays & National Holidays) for information related to palliative care and about establishments where such facilities are available in India.

Telephone: +91-9746745497 E-mail: info@palliumindia.org

Address: Pallium India, Arumana Hospital, Perunthanni, Trivandrum

While on the one hand, the Government of India accepts that pain management is its obligation, as enacted by the Indian Parliament in February 2014, doctors prescibing Buprenorphine for addiction treatment have been arrested. The doctors in Punjab since then have stopped prescribing Buprenorphine too, as part of their addiction treatment. The extent of misery it can cause is unbelievable.

Are you an activist in favour of access to pain management? Do you feel sad that so much of unnecessary suffering goes on around us, just because people who need opioids are denied it?

In all our enthusiasm, let us not allow the pendulum to swing too far the other way. The world is still suffering from the backlash in the USA.

Opioids have their role in treatment of chronic, non-cancer pain. No doubt. The American Pain Society’s recommendations of 2009 include this sentence, which summarises the situation: “Although evidence is limited, the expert panel concluded that chronic opioid therapy can be an effective therapy for carefully selected and monitored patients with chronic, non-cancer pain.”

However, they need to be used with caution. Read the article in Forbes.com, Opioid Misuse In Chronic Pain Patients Is Around 25%, New Study Shows, which states that the rate of addiction to opioids, when used in chronic non-cancer pain, can be as high as 10%. Depending on the social environment, up to 30% have been shown to be misused. Diversion to illicit channels must be guarded against.

We are happy that in India, though we were so keen to overcome the regulatory barriers to opioids, from the beginning we did not argue for unrestricted access to opioids through all pharmacies. When the “Narcotics Amendment Act” comes to be implemented, strong opioids will be available only through “recognised medical institutions”.

Volunteers’ Training Program – 18, 19 May

2-day Volunteers Training Program is conducted every month at Trivandrum Institute of Palliative Sciences, Arumana Hospital, Trivandrum. Anyone interested in learning about palliative care can attend. The next training is scheduled for 18 and 19 May. Contact: info@palliumindia.org, +91 471-2468991, 9746745497.

PARTING SHOT

The 11th of April saw an unusual get-together at the old age home premises in Thevara, Kochi, Kerala.

Some time back, a group of people on wheelchair had got together on Facebook to create an unusual organization called ‘God’s Own Wings’. This self-support group encourages people to get out of the confines of their four walls. At the function on April 11, which was inaugurated by Sophia M. Joe (Ms Deaf India 2014 – first runner up), Sowmya Parameswaran, a young woman, got an electric wheelchair from this organization. Receiving it, Sowmya said, “My neighbours do not know that I exist, except when they see me outside once in a blue moon, and ask, ‘Hey you were here, eh?’ I have only one regret; because I am a woman, I have few friends. All my old friends got married, they have their kids and families and they have no time for me. Now these people – Siju, Siva and others – are my friends. I now feel there are some things that I can also achieve.”

How can you help admiring these brilliant activisits, Dr Siju Vijayan, Mr C.S.Sivanandan and Sowmya Parameswaran?

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.